Day 42, Steps in the Journey

Today ends our sixth week of this journey, this epic rollercoaster. While we realize we are not the first ones to have followed this path, we also recognize that it is not a common path that everyone finds themself on. We also recognize that the vast amount of support we’ve received, of prayer being offered for Amber, of love being expressed for our family, is not something that all on this path are fortunate enough to receive. We are truly appreciative for this blessing, and know that there will be a time in the future where we will be able to pay this forward ourselves.

Today was another busy day. I wake up this morning in Amber’s room, and see Amber starting to wake too. I see Amber shifting her legs around, bouncing them up and down a bit. Noting that this is before my first coffee of the day, it takes me a moment to realize that I used the word “legs”, in plural. While Amber has been able to muster some hip movement, and swing that left leg into a few steps before, this was different – the hip, the knee, the ankle were all moving, in sync. By the end of today, we had Amber walk almost 30 feet down the hall, with her leg brace and walker supporting her, and the therapist providing balance. That leg is rapidly coming back to strength at a pace surprising to even the therapists. We still have a lot of work on that left leg, but wow – incredible progress.

Still much work to do with the left arm too. Little intentional movement still, but “little” is far better than “zero”. The race, as I see it, is to see how much ground we can gain before we start the radiation treatment, which is now two weeks away. I expect that her physical recovery will slow when she is also undergoing these treatments. But again, “slow” is also far better than “stop”, and we will work with Amber for as long as it takes.

Tomorrow is a big day. Amber’s surgery to replace the skull flap and install a port is scheduled for 8:40AM – 1:00 PM, and she will recover in the ICU for the following 24 hours before returning to our normal room. All signs point toward a smooth, standard procedure. But please, we ask for prayer for a successful surgery, for the surgeons performing the surgery, for a rapid recovery, and for continued progress. We will post an update here as soon as we can after the surgery.

If all goes well tomorrow, we are hopeful for a return home next week!

12 thoughts on “Day 42, Steps in the Journey

  1. Thinking of everyone, most especially Amber (super-hero, warrior-princess extraordinaire!!!) and sending prayers and all best wishes for today’s surgery. I am certain of a positive outcome and counting the days until this little girl goes HOME!!

  2. May the Lord’s healing hands hold Amber close. May the surgeons, nurses, anesthesiologists and other medical personnel channel His power to heal so that all goes well with Amber’s surgery today. May Mother Mary hold you both in her arms as you wait for the good news that all went well. That is my my wish and my prayer. God bless you

  3. My strength is yours. You are always in my prayers and thoughts Amber Grace. Kick butt today.

  4. It’s 8:10 a.m. on Thursday and Amber is going in the next half hour to replace the skull flap. God bless the doctors and assistants to safely do their task. Prayers for you Amber for a clean recovery.
    Love, Uncle Jim and Auntie Di

  5. Praying for you today Amber. Can’t wait for you to be home. Matt and Caron please let us know if there is anything we can do to help prep the house for Ambers homecoming. Building a ramp, any bath stuff you might need, shopping for her favorite foods and snacks. Etc.

  6. Such good news and most definitely will continue my prayers for her and her loved ones.

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